Cystic Fibrosis Program

Overview

Cleveland Clinic is accredited as a Cystic Fibrosis (CF) Care Center from the US Cystic Fibrosis Foundation. The Cleveland Clinic Children’s Pediatric Cystic Fibrosis Program specializes in the diagnosis, management and treatment of individuals with CF and those suspected to have CF. Patients seen in our CF center not only have access to the most advanced outpatient and inpatient clinical care, but also CF-focused clinical research programs.

We partner closely with our accredited Adult CF Care Program for a smooth transition when pediatric patients are ready for adult care.

A Team Approach

Our multidisciplinary care team has greater than 150 years combined experience, in caring for CF patients of all ages. Members of the CF team may include representatives from many of the specialty areas listed below.

Program Director

The pediatric CF program is led by Nathan Kraynack, MD who has been involved in the care of pediatric patients with CF for more than 17 years. He is board-certified in pediatrics and pediatric pulmonary medicine. Dr. Kraynack cares for children and young adults with all forms of lung conditions, particularly children with Cystic Fibrosis, other forms of bronchiectasis and end stage lung disease.

Prior to joining Cleveland Clinic Children’s, Dr. Kraynack served as the head of a large accredited CF Center for almost ten years. Leading a multidisciplinary team of caregivers, they developed standardized protocols for cystic fibrosis care that had not previously been used and were associated with dramatic improvement in patient outcomes at their center. These protocols have since been adopted at other care centers nationally and internationally on at least three continents. His passion for standardized care has extended to nutritional protocols for patients with cystic fibrosis and the inpatient management for patients with cystic fibrosis.

Additional Program Highlights

Comprehensive Cystic Fibrosis Newborn Screening Program (NBS)

Infants with high Immunoreactive Tripsynogen (IRT) and one or two mutations are referred to the Cleveland Clinic NBS program coordinator.

The NBS coordinator communicates with the primary care provider of a patient with a positive screening. Then, the family is contacted to set up testing. The NBS coordinator explains the appointment process including, the procedure for sweat testing, what testing is for, office visit with pediatric pulmonologist, and genetics counselor. An appointment is scheduled for the patient at that time.

The CF quality improvement committee is responsible monitoring, assessing and improving the quality of patient care and operational processes delivered in the pediatric cystic fibrosis program. This plan supports the organizational mission to provide high quality care and to continuously improve our performance.

Phase 3b, Randomized, Double-blind, Placebo-controlled, Parallel Group Study to Assess the Safety, Efficacy, and Tolerability of Tezacaftor/Ivacaftor (TEZ/IVA) in an Orkambi-experienced Population Who Are Homozygous for the F508del-CFTR Mutation

The CF Lung Transplant Consortium will establish a clinical and translational research network of CF lung transplant centers (CFLTCs). The centers facilitate the study of lung transplant for CF and other lung diseases to improve access, clinical care, and long term outcomes of individuals with CF who undergo lung transplant. For more information, please call 216.445.6671.